A Patient's Guide to Living with Reduced Kidney Function

68 Pages·2012·0.86 MB·English

Kidney
Beginnings
A Patient’s Guide to Living with
Reduced Kidney Function
The American Association of Kidney Patients (AAKP) wishes to
thank all the patients, family members and professionals who gave
generously of their time and resources in order to provide Kidney
Beginnings: A Patient’s Guide To Living With Reduced Kidney
Function.
The Kidney Beginnings Team spent numerous hours developing
this book. Their devotion to the book ensured its success. The Team
members included Rosa Rivera-Mizzoni, MSW, LCSW (professional);
Ellie Durrett (patient); Judy Weintraub, MS (patient); and Bonny
Wilburn (patient).
We thank our writer, Kim Buettner, who took all of our thoughts and
ideas and wove them together into the great written piece we are
sharing with you.
To our sponsor, Ortho Biotech Products, L.P., thank you for the
generous sponsorship that provides patients with this very important
resource.
Last, but certainly not least, thank you to our fellow patients who told
AAKP exactly what you needed and wanted to help you and your family
as you experience the journey with chronic kidney disease (CKD).
Index
Introduction ............................................................................ 1
Kidneys 101 .......................................................................................2
What Are The Kidneys and What Do They Do? ..........................2
Chronic Kidney Disease .....................................................................4
Will I Know If I Start To Have Kidney Problems?. .......................4
What’s The Best Way To Be An Active Member
In My Healthcare? ..........................................................................4
What Should I Do When My Doctor Recommends
A New Test? ...................................................................................4
When I Have Tests Done, What Should I Do
With The Results? ..........................................................................5
What Tests May Be Performed To Gauge My
Kidney Function? ............................................................................6
How Is Percentage Of Kidney Function Measured? .....................8
What Is GFR And What Role Does It Play In
Measuring My Kidney Function? ..................................................8
My Doctor Is Watching For Protein In My Urine.
Why Is This? .................................................................................. 9
How Often Should I See My Doctor When It’s
Related To CKD? .........................................................................10
What Can I Do To Protect The Function
Of My Kidneys? ...........................................................................10
CKD Risk Factors .............................................................................................12
Diabetes and Hypertension ............................................................ 14
Diabetes ........................................................................................14
If I Don’t Watch My Blood Sugar Levels, What
Can Happen To My Kidneys? .....................................................14
How Else Can Diabetes Damage My Kidneys? ..........................14
How Can I Prevent Diabetic Kidney Problems? ..........................14
Hypertension ................................................................................15
How Does High Blood Pressure Damage The Kidneys? .............15
My Doctor Told Me That Controlling My Kidney Disease
Means Controlling My Blood Pressure. What Does This Mean?..15
Are There Medicines To Slow Down Kidney Damage? .............16
Side Effects of CKD ......................................................................... 18
Anemia ..........................................................................................18
What Are The Symptoms Of Anemia? ........................................18
How Should I Describe How I’m Feeling To My Doctor ...........20
What Can Be Done To Prevent Or Control Anemia? ................20
How Will My Doctor Know If I’m Anemic? ..............................20
What Type Of Iron May My Doctor Prescribe? .........................21
How Can I Monitor My Energy Level? ......................................22
Continued On Next Page
Index
Your Emotions ................................................................................ 23
What Emotional Changes Might I Experience? ..........................23
How Do I Tell My Family And Friends? ....................................24
What Else Should I Do? ...............................................................25
Your Healthcare Team .................................................................... 26
I’m Facing A New Team Of Healthcare Professionals.
What Are Their Roles? .................................................................26
How Do I Talk To My Healthcare Team? .................................28
What Questions Should I Ask At My Doctor Visits? ..................28
Medications .................................................................................... 30
What Medicines Must I Take? .....................................................30
What Medicines Should I Avoid? ................................................31
What Is Alternative Or Complementary Medicine? ....................31
Are There Any Herbal Products That May
Cause Further Damage To My Kidneys? ....................................31
Nutrition .......................................................................................... 33
What Is A CKD Diet? ..................................................................33
If I Have Diabetes What Else Should I Keep In Mind? ...............36
How Else Can Proper Nutrition Help Me? .................................36
Is A Dietitian Helpful?..................................................................38
What Other Activities Should I Avoid? .......................................38
Exercise ........................................................................................... 39
I Have CKD And I Continue To Work.
How Will Exercise Help Me? ......................................................39
Are There Things I Should Know If I Have Diabetes
And Want To Exercise? ...............................................................40
Why Is It A Good Idea For Me To Exercise? ..............................40
Rehabilitation and Employment .................................................... 42
How Will CKD Impact My Ability To Work?. ..........................42
When and If My Kidneys Fail ......................................................... 43
If My Kidneys Begin To Fail,
What Are Some Of The Signs?. ...................................................43
What Types Of Treatment Options Are There?. .........................43
Conclusion ...................................................................................... 44
Appendix ......................................................................................... 45
Glossary .......................................................................................... 57
1
Introduction
One in nine adult Americans has chronic kidney disease (CKD).
However, many don’t realize they have reduced kidney function.
Therefore, they don’t know they can take steps to protect their kidneys
from further damage. If your doctor has diagnosed you with CKD, this
book was written specifically for you and your family. Take the time
to read through all the information and write down any questions you
have in the spaces provided. At your next doctor’s appointment, take
this book with you and discuss your concerns with your doctor. You
are the most important member of your healthcare team, and it’s up to
you to take a leadership role.
At this point, you most likely have a lot of questions, the largest one
being, “What is CKD and why have I been given this book?” CKD
means decreased function of the kidneys. Over time, the condition may
progress and your kidneys may fail. The purpose of this book is not to
scare you, however, it’s to provide you with the information you need
to take control of your healthcare and do what is necessary to preserve
and protect your kidney function. There are many health conditions,
which are discussed later in this book, that lead to CKD. If you’ve
been diagnosed with one of these health conditions, there are many
things you should know about your health that will impact your kidney
function.
One common misconception about CKD is that it’s something you
don’t have to worry about right now. Your kidneys are functioning
and everything is fine, so that means kidney failure won’t happen to
you. This is a false hope that causes many people not to maintain their
health and therefore increase the damage to their kidneys. Don’t let this
happen to you. There are things you can do to maintain or improve
your health, and there are things you can do to protect your kidneys
from further deterioration.
A Friendly Note: My name is Sam and I’ll be your guide through this
book. I’m like you. I have CKD. I used education to make myself
more aware of my condition. I learned what I needed to do to protect
my kidney function. As I’m sure you know, CKD doesn’t go away.
This isn’t something you can watch for awhile and then suddenly
everything becomes “normal” again and you never have to worry about
CKD. CKD means you’re at greater risk for kidney failure. If you do
nothing, chances are your kidneys will fail. Take it from me, becoming
involved in your healthcare, learning and doing what is needed makes a
difference in your overall health.
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function
2
Kidneys 101
A Friendly Note: Before we can begin explaining CKD, you need to
understand the role of your kidneys. The information below may have
some medical terms with which you aren’t familiar. We tried to explain
everything, but sometimes it’s difficult when we’re dealing with medical
terms. If you find something you’re unclear about, jot down a note in
the margin and ask your doctor about it on your next visit. Taking an
active role means knowing what questions to ask when. Our doctors are
here to help us and they don’t mind when we ask questions. After I first
found out about CKD, I kept a notebook with me at all times. Every
time a question arose, I wrote it down and asked the doctor at my next
visit. It really helps.
What are the kidneys and what
do they do?
Kidneys are like a 24-hour
cleaning machine for your
blood. Kidneys are twin organs
shaped like kidney beans.
They’re located below the rib
cage in the middle of your
back. In adults, each kidney is
about the size of a closed fist.
The kidneys are joined to your
bladder by tubes called ureters.
These tubes carry urine from
the kidney to the bladder.
The kidneys filter your blood
and make urine. The bladder
holds the urine until your body
gets rid of it when you urinate. Each day, the kidneys pump about
200 quarts of blood through 140 miles of tubes and millions of filters.
Though most people are born with two kidneys, some are born with one
kidney and lead normal lives. People can live a near normal life with as
little as 20 percent of their total kidney function.
Most people don’t know all of the things kidneys do to keep them alive
and healthy until something goes wrong. The kidneys:
l Remove waste products from the blood. As your body works, it
builds up waste products that need to be removed. The kidneys are the
“garbage collectors” that remove the waste from your body in the form
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function
3
of urine. If it were not for the adequate removal of toxic substances in
the urine, as well as in the stool, we would become ill.
l Remove extra fluid. Kidneys get rid of the extra water in your body.
l Adjust levels of minerals and other chemicals. The kidneys balance
important minerals and chemicals in your body like sodium, potassium,
calcium and phosphorus. For example, if you eat a lot of salt, the
kidneys will get rid of the extra you do not need. It’s important that
these chemicals remain balanced in order for your cells to function
correctly.
l Produce hormones. Kidneys make hormones (chemical substances
that get in the blood stream) that help control your blood pressure.
They also help to make red blood cells that carry oxygen to your whole
body. The kidneys produce a hormone called erythropoietin (EPO) that
stimulates red blood cell production by the bone marrow. Without EPO,
red blood cell production declines. This results in a condition known as
anemia. Anemia causes extreme fatigue and overall weakness. Kidneys
also make vitamins needed for strong bones.
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function
4
Chronic Kidney Disease
A Friendly Note: The phrase “chronic kidney
disease” may sound foreign to you. This section will
answer some of the most commonly asked chronic
kidney disease (CKD) questions. However, this
section doesn’t answer everything. You’ll find other
valuable information throughout this book. Be sure
to read through it thoroughly and ask your doctor
any questions you may have.
Will I know if I start to have kidney problems?
Not necessarily. The early signs of CKD can be subtle and therefore many
people do not realize they have symptoms of the condition. The symptoms
can include high blood pressure, blood in the urine and swelling in the legs,
feet or hands. The only way to know for sure if you’re starting to have
kidney problems is a simple test which detects protein in the urine. Do not
wait for signs of kidney damage to have your urine tested. Talk to your
doctor and ask what type of tests you should have performed.
A Friendly Note: You play an important role in your healthcare. Actually,
you ARE the most important player. And, as the most important player,
you need to be informed and involved. Not only do you need to have an
understanding of the tests being performed and the measures you should
take to preserve your kidney function, but you need to realize it’s OK to
ask questions, share insight and keep track of your own health.
What’s the best way to be an active member in my healthcare?
The answer is simple. Get involved with your healthcare. No one knows
your body better than you. By understanding the various tests performed
to measure kidney function, you can become active in monitoring your
health. By doing this, you will also become more aware of the activities
that can slow down the progression of kidney disease. If you take an
active role in your healthcare and understand your condition, whatever
challenges you face will be less complicated to adjust to.
What should I do when my doctor recommends a new test?
When your doctor prescribes a test to gauge your kidney function, there
are several questions you should ask. When you ask the questions, make
sure you write the answers on a piece of paper. Some people like to keep a
journal in which all of their important information is kept. This will help
you later when you’re trying to digest everything the doctor has told you.
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function
5
Whenever you deal with a subject that’s new or unfamiliar to you,
it’s easy to become overwhelmed and confused. It’s important to remember
that the healthcare team is there to help you. Don’t become frightened
because you don’t understand something. Instead, ask questions.
Sample Questions to Ask:
l What is the name of the test?
l Why do I need this test?
l Could the test results change the treatment of my condition? If so, how?
l How accurate is the test? Is there a chance for a false-positive or a
false-negative result?
l Is there anything I should do to improve the accuracy of the test?
l Is there anything special I need to do before the test, such as limiting
food intake, fasting, not taking medications, exercising, etc.?
l Is this test covered by my insurance?
l Are there any consequences if I delay or avoid having this test done?
l Are there any health risks associated with this test? If so, what are they?
l When and how will I receive the test results? What will the results mean?
l What is the next step if the results are normal or abnormal?
A Friendly Note: After you have a test performed, when the doctor calls
or when you meet with the doctor to discuss the results, you should be
prepared with a pen and paper. Try to write down as much as you can.
This will help you remember what your doctor has told you. You may also
want to take someone to the doctor appointment with you. With another
person there, you have the advantage of hearing with two sets of ears. This
will help you if you have questions later on about what your doctor said.
Another helpful tool is AAKP My Health™ located on the AAKP Web
site, www.aakp.org. I use it. AAKP My Health allows you to track your
lab results, information about your medications, doctor visits, prepare
information for upcoming doctor visits and store your healthcare team
contact information. This is a FREE service provided by AAKP.
When I have tests done, what should I do with the results?
Keeping track of your own results puts you in control of your healthcare.
The more you know about CKD, your percentage of kidney function, your
hemoglobin and other important results, the better you can take care of
yourself. In the Appendix, there are three sample tracking charts to help
you keep a history of important test results.
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function
6
You should also take an active role in monitoring your own health.
Purchase a blood pressure cuff and learn to take your own blood
pressure and track the results. By keeping track of your test results,
you’ll know what questions to ask your doctor during the next visit.
What tests may be performed to gauge my kidney function?
Kidney disease is diagnosed and monitored by measuring various
substances in your blood and urine. There are several tests that may be
performed to monitor your kidney function. It’s just as important to
know the purpose of these tests as it is to keep track of your own test
results. By doing this you are taking an active role in your healthcare
and becoming more aware of your personal health.
The tests your doctor may order will help him/her evaluate several
factors related to your kidney function and overall health. The tests will
answer questions such as, what is your current kidney function, what
is causing your kidney function to decrease, what treatment options are
available to slow the progression of kidney failure, etc.
When kidney function is reduced, certain substances begin to build
up in the bloodstream. The following blood and urine tests measure
changing levels of these substances in the bloodstream. This will help
your doctor determine how well your kidneys are working.
l Complete blood count (CBC). A complete blood count is a very
common test and can tell your doctor a lot about what’s happening
with your kidneys. Your blood is made up of three basic types of cells:
red cells, white cells and platelets. Red cells carry oxygen to body
tissues and remove carbon dioxide. White cells fight infections and
harmful substances that invade the body. Platelets help stop bleeding
by plugging leaks in blood vessels. It takes all three types, working
together properly, to perform vital bodily functions. In order to know
if your blood cells are functioning properly, a CBC is commonly
performed to measure the levels of the different types of cells in your
body.
A CBC is a relatively fast and painless procedure. A healthcare
professional will take blood from your vein. The blood sample is then
sent to a laboratory for analysis (see CBC chart on page 54). This chart
will help you learn how to read your own CBC results.
KidneyBeginnings A Patient’s Guide To Living With Reduced Kidney Function